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Sjรถgrens and Lupus...

Apr 22, 2016 1:25 PM

Hello everyone I'm new here.
I have Sjogrens Syndrome and Lupus and just received new medications from my new rheumatologist so I thought it would be helpful to have an app like this to help keep up with symptoms and side effects.

Apr 22, 2016 2:29 PM

Welcome to our community family Taetae18! I was dx with Sjogrens last year, and have fibromyalgia and hypothyroidism among many other chronic pain issues. This app is great for tracking. In the symptoms, when I don't see something I need (sjogrens blisters, migraine, fibro flare) I add it in the list and I detail in the comments. I'm on Plaquenil for the sjogrens, and it's even helped my fibro by reducing my daily avg pain from a 7-8 to a 3-4; not including flares. I opted you find all the support you need. Don't be afraid to ask questions or vent/cry. We all have bad days, and there are many shoulders & listening ears here, as well as good advice & suggestions. Not everything works the same for everyone, so if something doesn't seem right let your doc know. Hugs & prayers! ๐Ÿ™‚๐Ÿ’•๐Ÿ™๐ŸŒผ

Apr 22, 2016 2:46 PM

Taetae18 I also lupus sjogrens. I'm being treated with methotrexate and plaquenel. They wanted me on Prednisone too but I turned down because that drug scares me too much. I'm also on perocette for pain. Sorry you're battling this too. Welcome

Apr 22, 2016 2:47 PM


Apr 22, 2016 3:02 PM

Gibber, I've been given prednisone so much for asthma & allergies, not to mention the epidural steroid injx. I'm suffering bone loss now. Try to avoid it unless you catch something and need it short term to boost your immunity. Hugs! ๐Ÿ™‚๐Ÿ’•๐Ÿ™๐ŸŒผ

Apr 22, 2016 4:26 PM

It's so awesome to meet others like me

Apr 22, 2016 5:20 PM

Nice to meet you too Taetae. I can't bring to go near prednisone with a 10 foot pole. Sorry you've suffered as a result of it. Thank for the warning that confirms it for me Flappy!

Apr 22, 2016 5:23 PM

Oh No I have never taken Prednisone. I'm way too scared as well! I take Gabapentin and Plaquenil.

Apr 22, 2016 5:25 PM

I think prednisone causes more trouble then good.

Apr 22, 2016 5:52 PM

Unfortunately for me my asthma sometimes won't improve without it. I also didn't know there was anything to be concerned about. That's why this community is so important, to learn risks so we are able to make informed decisions. ๐Ÿ™‚๐Ÿ’•๐Ÿ™๐ŸŒผ

Apr 22, 2016 7:18 PM

Oh! Gibber I am on one medication for both until I see the Rheumatologist and that is Gabapetien! I was on it for my Joint pain before I found out about the Lupus and Sjogren's Syndrome and he wants to keep me on it for until Rheumatologist says otherwise! Thank You Taetae18 for the reminder lol!!

Apr 23, 2016 10:26 PM


Apr 24, 2016 3:27 PM

Are you okay Gibber?

Apr 24, 2016 4:14 PM

Thanks for asking Moparmom. I haven't been in good shape with the chemo. These meds take 3-6 month's to even know if they're going to help at all. In the meantime I'm dealing with a lot of pain from the lupus and the side effects of chemo with no relief aside from some perocette that takes the edge off of pain for a short time. That while trying to build my new business.

Apr 24, 2016 11:50 PM

Gibber I am so sorry you are having to go through so much right now. The worst I'm dealing with is serious fatigue, dry mouth and eye's and pain in my back and hip and joint's. Compared to your situation mine is a cake walk. Praying for you my friend! ๐Ÿ’•๐Ÿ™

Apr 25, 2016 9:49 AM

Thank you Moparmom. I'm sorry you're suffering too. It all just sucks for both of us. <3

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